by Rosi Reed
Rosi’s son Nico died unexpectedly in an NHS-run supported living home in 2012. His death caused huge trauma for Rosi, made so much worse by the way the family was treated by the NHS Trust and the Local Authority responsible for the placement.
I believe that each person’s PTSD experience is unique to them. It is formed by the nature of the traumatic incident, the character and circumstances of the person. The most important thing about PTSD is that it’s normal. It’s the reaction of the brain trying to process the un-processable. We often don’t spot it for a long time, and the people around us don’t always understand or know how to help.
It can be challenging to get the right treatment, particularly from the NHS. It was months before anyone described what I was going through as post-traumatic stress disorder. It was years before I had conversations about how to control it.
How it began
Within weeks of my son’s death, my partner and I knew we were greatly in need of counselling as we were at the stage where we barely remembered to wash and eat. We were unable to even talk about it to our GP.
My partner works at a boarding school, and the school’s Head of Student Care arranged for us to see the school’s in-house counsellor, which was free. We were able to see him twice a week, which felt like a lifeline. The counsellor had no prior experience of grief counselling and had never worked with a traumatically bereaved family. Still, he was very excited to have this opportunity to work with us and try something different. I don’t remember anything from the initial sessions – in fact, those first few months are pretty much a blur, scattered through with random and powerful snapshot moments.
One day I, was alone at my counselling session, and I told him the day before something quite terrifying had happened. I was in my bedroom doing my hair when I saw in the mirror behind me that a stranger had walked into the room. I whirled around to confront them, but there was no one there, and when I turned back, to my horror, they were there in the mirror. Then suddenly, the stranger turned into me. I was looking at my own reflection. I remember shaking all over, quite terrified and unable to understand what was happening.
When I told him this, the counsellor replied, “oh yes, that’ll be the stress. That sort of thing is common in your state”. He told me not to worry about it but to let him know if it happened again. That was the end of it. He talked about something else, and then our session ended.
For months, we were all jerked from our sleep by a loud noise, but we didn’t know what that sound was. Occasionally, we would identify it as screaming, but in our sleep-fuddled state, we couldn’t work out where the screaming was coming from. I mentioned it to the counsellor, and he said I was just dreaming and imagining it. Then, one night, close to a year after my son’s death, I was woken by the screaming. For the first time, I realised it was I who was screaming. I sat on the side of the bed shaking, realising that it was I who woke us all night after night, screaming. I told the counsellor, and he told me not to worry about it as it would fade over time.
A dead end
The last time I saw the counsellor was four months before my son’s inquest, and by then, I had been seeing him for almost two years. In the last months, he made it clear that he felt we were done, and he was bored by the sessions. He repeatedly asked me why I was still coming to see him. His last words to me were, “good luck with everything – I think we’ve taken this as far as we can”. On the wall of his office was a huge pinboard. During my final session, I had slowly and carefully used all the randomly placed pins stuck on the board to form a large word across the board. Dissociation. He looked at it but said nothing. I said nothing. I’ve wondered since how long it stayed up on the board.
From head tapping to self-harming
From the beginning, it was head tapping. Whenever I was stressed, I would head tap. Always with my right hand to the right side of my head. If the stress became worse, I’d rock and tap. The next stage after that was that tapping became hitting. The final stage was a need to be in a small, confined space and in that space, I would be punching and slapping myself in my head and face. I also “knew” at this stage that I mustn’t speak – it would be dangerous if I spoke and people I loved would come to harm. A year after my son’s inquest, this had become regular – maybe once a month.
I told no one, and no one asked. My partner was at work all day, and at night he went out to the garden shed to drink and smoke. I was alone a lot.
A web of lies
In 2016 I discovered that my partner had been lying to me about an aspect of his life. The people responsible for my son’s death had done a great deal of lying. They had lied and lied again and then even lied about the lying. By that stage, four years after my son’s death, I felt as if I was drowning in these lies. On top of that, my partner’s lies made me feel as if I was falling into quicksand that had no bottom, and there seemed to be no safe place where no one lied to me.
My PTSD shot off the scale and became a beast I couldn’t control – it was controlling me. I was constantly muttering, not conversations but random words and phrases over and over again, like some kind of sound mandala. I felt that if I repeated the right words in the right way, somehow that would keep me safe and stop the next stages from unfolding. It never did.
Things hit crisis point
My crisis came on a Saturday night in late autumn. I was cooking a new recipe for dinner and my partner, who had been out all day, started telling me what I was doing wrong. It was as if my head just fell apart all over the floor.
I remember nothing, and when I “came to” two hours later, I was in the street, quite far from my house. It was dark, cold and I was soaking wet. I had no recollection of how I got there or why I was wet. After about 40 minutes of wandering around, trying to get my head together, I walked home. My partner was watching the TV. All he said was, “you’re very wet, and you’ve been gone a long time”.
I went straight to a small, confined space, punching and slapping phase. I don’t remember this very well, but I know my partner was horrified and frightened. I felt I couldn’t get past him, so I went to the bathroom floor, and in lieu of a confined space, I wrapped a large towel over my head and face. Because I knew “I mustn’t speak”, I couldn’t tell him what to do. Eventually, he sat on the floor with me and just held me. That helped hugely.
Later that night, I promised him that I would go to see the GP on Monday morning.
We have a lovely GP. We call her “the listening doctor”. When I saw her on Monday morning, she said, “I only have one question for you. Why have you waited this long to come and see me?”
I couldn’t answer her then, but now I realise it was because I thought that a) I could control it and b) I was a fraud because I couldn’t possibly have PTSD as everyone knew that was for soldiers, firefighters and the police. She told me that if I was going to received counselling through the NHS we had to go through some quite strict procedures but that they might give excellent results over time.
A rocky start
After a week, I received a letter offering me 6 weeks of counselling with a therapist based at the GPs surgery. It was an intimidating letter that triggered a stress attack, taking me up to hitting but not as far as the cupboard. The letter stated that I would have one session once a week for 6 weeks and that if I was late for or missed a session, then all future sessions were automatically cancelled. The sessions would begin in 6 weeks.
I phoned my GP and asked if it would be possible for me to meet the therapist or at least see a photo of her in advance. I explained that going to new environments and meeting new people was very hard for me. It was the lack of control. I explained that if I could go to the place and see the people in advance, then I could “walk myself through it” in my mind. This allowed me to plan out where I would walk, where I would sit etc., which I found incredibly calming.
My GP asked the therapist, who said no. This meant my first visit wasn’t a great success. My stress levels went into overload, and I wouldn’t come out of the small room adjoining the therapy room. So we did our first session with her standing in the hall while I hid behind a kitchen cupboard.
The good and the bad
But gradually it got better and those sessions were enormously helpful. She explained to me exactly what was happening and why my mind and body had the response they did. She taught me a new word – triggers. We discussed coping mechanisms and she helped me to set some up. We talked about the importance of trigger identification and avoidance. I felt I was really getting somewhere and for the first time in years I wasn’t constantly afraid and hyper-vigilant.
Those 6 weeks passed very quickly and the final session was exactly one week before the independent investigation into my son’s death published. It was a very bad time for me. At that final session, I started talking about the investigation publishing, the media interest and the effect it was having and I went into a massive panic attack, curled up and gasping for breath on the floor.
There was a long, long silence while I fought for breath and for some sort of control. Then she said, “I’m very sorry, but our session had ended and you’re now overrunning into the next person’s session. You’ll have to either leave or we’ll have to find you another room to lie in”. By then I was at the stage where I couldn’t answer her. After a long silence she said “Is there someone I can call to come and get you?” but again, I couldn’t answer. She went out of the room for a few minutes and then came back and said, very briskly, “I really must ask you to leave now”.
I crawled to the door and wobbled out into the street. I was almost knocked down by a passing car I hadn’t seen. At home, I just went straight to the cupboard.
But that day, I started to use my new coping mechanisms. I played my special playlist over and over. I repeated my new mantras. I tapped my hand and arm instead of my head. I told my partner, “I’m not managing”, which was the green light phrase we used when I needed help. I got through a day, then another day, until I’d done a week. The investigation published, and it was awful. The media barrage was awful. I came off social media completely, used my mantra, my “good” tapping and my playlist. My problems with not being able to answer the phone came back, and I didn’t see anyone outside of my very small “trust” circle for months, but I held on.
Living life with PTSD
The years have turned since that week, and I’ve started to write again. I still listen to my special playlist, but now it’s because I love those songs, and when I hear them, I remember how they sustained me when I needed it most. There’s bad days, good days and still sometimes, some tapping. After continuing to struggle with it, I dealt with my problems with the phone by cancelling the landline and having the phone taken out. Some things are still ongoing – of course they are.
I still live with PTSD, but the difference is that now, I understand what’s happening to me and why. I know its voice; I know how to stop it from rising inside me to the point where it’s in control. Perhaps one day it’ll be gone, perhaps not. But for now, I’m just trying to live my best life as someone with PTSD. It’s not perfect, but it’s alright.
About the Author
Rosi Reed’s son Nico died unexpectedly in an NHS-run supported living home in 2012. Nico was known as “the golden boy” and was very much the heart and centre of his family. His death caused huge trauma for Rosi, made so much worse by the way the family was treated by the NHS Trust and the Local Authority responsible for the placement. After the 3-day inquest in 2014, there was a 2.5-year investigation which was then investigated over 2 more years for maladministration. Rosi maintains a blog about her experiences: Nico’s Legacy
Where can I find out more?
- Post-traumatic stress disorder (NHS)
- Post Traumatic Stress Disorder (Royal College of Psychiatrists)
- Post-traumatic stress disorder (Mind)
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